@lsheerin, I agree that the waiting is hard. And there is no way to predict how long your husband and you will be waiting as @ssapp1, @firecat, @katebw are discussion with you.
Since you are new to the transplant journey, I have located some discussions with some useful information for you from more patient/caregivers like yourself.
Hi Rosemary,
Thank you for the useful information. I am going to read each and every article you sent. I feel, the more information I have, the better I am prepared. Luckily, my husband is not horribly sick and has a good attitude. He's not working, but we still go out when he's up for it. His MELD score goes between 26-28. I love hearing other people's stories...how long they waited on the list, when they got the call and how they felt. I also love to hear how everyone is doing post transplant. It really gives me hope and I love hearing how they feel so much better post surgery. I will read anything anyone wants to send!! Again, thank you for the articles. I am going to start reading them now!!
Hi Everyone,
God Bless you all. I wish you all great health. My husband is waiting for a liver transplant. He will be going to Tampa General. I do have a question. I know everyone is different, but can I ask how long you all had to wait for "the call" and how long you had to get to the hospital? I appreciate any comments.
Hi
I am in the being of my 6th month, Yes I have had abdominal distention and bloating, burping, nausea , difficult eating, finally starting to get better, but I drink a protein drink now which has help instead of eating slow process
I have had the same symptoms, at being of six months post transplant liver, but I have had problems with my bile duct leak and structure, stent and pancreatitis
Hoping no more problems
@kandidubrall, Happiness is hearing that you are 6 months, and starting to feel better!
I also had my transplant at Mayo Rochester and it took some time and blood pressure medicine changes until my blood pressure reached a satisfactory stable level. I did have some light headedness and dizziness several years ago that was remedied by a slight adjustment. I hope that you will let your transplant team know about your blood pressure problems and the episode where you passed out. Do you use the patient app?
They did tell me to be patient that the process should fix it but could take up to a year. Pancreatitis is a possible side effect they watch for after an ERCP. I'm sorry to hear you got it. Try and relax, trust your doctors, ask all the questions you want to ask even if you feel you've asked them before. If you are wondering about it, they can give you the information again until you feel your question has been answered. Although my leak is resolved, for now, I still have the stricture and they are working on widening it. I think I have 3 stints in the duct right now. Every time I go in they say, we will either, add to or remove but don't know what they are dealing with until they get in there. It can be a long process with lots of worry. I can tell you I'm feeling much better 9 months out but there were many times I was filled with worry and felt down about my recovery. It will get better.
I will try but on my 4th ERCP replacement of stent got another bile duct leak, pancreatitis again, very worried are they giving me chronic pancreatitis? Second time, just six months out have ERCP on 10/2/23
@kandidubrall, I apologize for the confusion that I caused.
I intended to ask if you have created your account in Mayo Clinic's PATIENT ONLINE SERVICES? You can access your health information. appointments, billings, and send/receive message to/from your transplant team via your coordinator.
I use both the online on my computer and have the App on my iphone . For me, it is a convenient way to ask a non urgent medical question to my coordinator.
Hi Rosemary,
Thank you for the useful information. I am going to read each and every article you sent. I feel, the more information I have, the better I am prepared. Luckily, my husband is not horribly sick and has a good attitude. He's not working, but we still go out when he's up for it. His MELD score goes between 26-28. I love hearing other people's stories...how long they waited on the list, when they got the call and how they felt. I also love to hear how everyone is doing post transplant. It really gives me hope and I love hearing how they feel so much better post surgery. I will read anything anyone wants to send!! Again, thank you for the articles. I am going to start reading them now!!
Hello
You got one here.
I am 4 and half years post liver transplant.
If your meld score is in the range of 28, I think you are a viable candidate for a transplant. The transplant team may be able to give you some details to place you on the waiting list.
As a matter of fact, the hospitals do a very good job.
In my case, after the diagnosis, I pretty much said to myself I am done and just went to the next step by preparing myself for the eventuality.
As far as I was concerned obtaining a liver is like winning a lottery.
A blood work during a routine doctor's visit for my annual physical revealed that I had a low count of red blood cells and was requested to go to the Emergency dept of the hospital for infusion. It was successful, the hospital kept me in the hospital for 4 days for further diagnosis.
After the fourth day, I was informed that my liver needs replacement.
I just did not know what I should do next. Luckily the hospital Oncologist worked out and called a couple of hospitals for treatment etc.
The University of Virginia Hospital called although it was 100 miles one way from my place, the visit was well worth it.
After 8 months of continuous testing and various other checks, I was placed on the waiting list.
The funny part is one must be in the range of 28 in the meld score to qualify for a liver-not guaranteed.
By that time my face was totally jaundicing and fluid was gathering in my stomach which had to be syringed every 4 weeks or so.
At this stage, I was planning an overseas trip to Israel to get myself baptized again, and when I informed the doctor, he said to cancel all the plans without any explanation.
After a couple of months in December, I was informed that they found a matching liver for me.
My reaction was, well they just got hold of the wrong person.
Just could not believe that there was a liver waiting for me. God performs miracles in various ways for sinners like me.
The surgery took place in January 2019 and my donor was initially anonymous and then the hospital arranged to meet them after a few months.
This was a 23-year-old girl from Allentown PA, who was going to school in Lynchburg VA.
She was willing to take a chance and help someone for a second chance.
Amazingly it was a 93% match. How often this happens?
She and I are very close and we chat almost every other day.
I am still around with all the hospital regimens, like medications, food intake, workouts, etc.
Not sure what will happen tomorrow, since I am on borrowed time. But every day is a blessing
Hello
You got one here.
I am 4 and half years post liver transplant.
If your meld score is in the range of 28, I think you are a viable candidate for a transplant. The transplant team may be able to give you some details to place you on the waiting list.
As a matter of fact, the hospitals do a very good job.
In my case, after the diagnosis, I pretty much said to myself I am done and just went to the next step by preparing myself for the eventuality.
As far as I was concerned obtaining a liver is like winning a lottery.
A blood work during a routine doctor's visit for my annual physical revealed that I had a low count of red blood cells and was requested to go to the Emergency dept of the hospital for infusion. It was successful, the hospital kept me in the hospital for 4 days for further diagnosis.
After the fourth day, I was informed that my liver needs replacement.
I just did not know what I should do next. Luckily the hospital Oncologist worked out and called a couple of hospitals for treatment etc.
The University of Virginia Hospital called although it was 100 miles one way from my place, the visit was well worth it.
After 8 months of continuous testing and various other checks, I was placed on the waiting list.
The funny part is one must be in the range of 28 in the meld score to qualify for a liver-not guaranteed.
By that time my face was totally jaundicing and fluid was gathering in my stomach which had to be syringed every 4 weeks or so.
At this stage, I was planning an overseas trip to Israel to get myself baptized again, and when I informed the doctor, he said to cancel all the plans without any explanation.
After a couple of months in December, I was informed that they found a matching liver for me.
My reaction was, well they just got hold of the wrong person.
Just could not believe that there was a liver waiting for me. God performs miracles in various ways for sinners like me.
The surgery took place in January 2019 and my donor was initially anonymous and then the hospital arranged to meet them after a few months.
This was a 23-year-old girl from Allentown PA, who was going to school in Lynchburg VA.
She was willing to take a chance and help someone for a second chance.
Amazingly it was a 93% match. How often this happens?
She and I are very close and we chat almost every other day.
I am still around with all the hospital regimens, like medications, food intake, workouts, etc.
Not sure what will happen tomorrow, since I am on borrowed time. But every day is a blessing
WOW!!! I'm so happy for you. My husband's MELD score ranges between 26-28. He cannot accept a donor liver. He needs the whole thing. He's only been on "the list" for 3 weeks, but it feels like years. They do say Florida has the shortest wait times, so we'll see. I don't think you're on borrowed time. I thing you've been given a second chance at a new life!!! Make the best of every day!!
Any reason he cannot accept a live donor liver?
They take 1/3 of the donor's liver and attach it to his body.
The liver grows to its normal size in 30 days for both parties.
Thanks for the kind words.
Regards
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Hi Rosemary,
Thank you for the useful information. I am going to read each and every article you sent. I feel, the more information I have, the better I am prepared. Luckily, my husband is not horribly sick and has a good attitude. He's not working, but we still go out when he's up for it. His MELD score goes between 26-28. I love hearing other people's stories...how long they waited on the list, when they got the call and how they felt. I also love to hear how everyone is doing post transplant. It really gives me hope and I love hearing how they feel so much better post surgery. I will read anything anyone wants to send!! Again, thank you for the articles. I am going to start reading them now!!
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2 ReactionsHi
I was very lucky, I went to Mayo Clinic, 1/7/23, had , liver transplant on 1/23/23 , but not everyone, is as lucky
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1 ReactionI have had the same symptoms, at being of six months post transplant liver, but I have had problems with my bile duct leak and structure, stent and pancreatitis
Hoping no more problems
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Hug
1 ReactionNo what app ?
I will try but on my 4th ERCP replacement of stent got another bile duct leak, pancreatitis again, very worried are they giving me chronic pancreatitis? Second time, just six months out have ERCP on 10/2/23
@kandidubrall, I apologize for the confusion that I caused.
I intended to ask if you have created your account in Mayo Clinic's PATIENT ONLINE SERVICES? You can access your health information. appointments, billings, and send/receive message to/from your transplant team via your coordinator.
Here is where to creare an account, or to log in to your account.
https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline
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The Mayo App that I referred to is the download for the app so you can access the information on your iphone. Here is the link if you are interested. https://www.mayoclinic.org/apps/mayo-clinic
I use both the online on my computer and have the App on my iphone . For me, it is a convenient way to ask a non urgent medical question to my coordinator.
I was crazy lucky too. Recieved the gift of life on Jan 22nd 2023. Best too you!
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2 ReactionsHello
You got one here.
I am 4 and half years post liver transplant.
If your meld score is in the range of 28, I think you are a viable candidate for a transplant. The transplant team may be able to give you some details to place you on the waiting list.
As a matter of fact, the hospitals do a very good job.
In my case, after the diagnosis, I pretty much said to myself I am done and just went to the next step by preparing myself for the eventuality.
As far as I was concerned obtaining a liver is like winning a lottery.
A blood work during a routine doctor's visit for my annual physical revealed that I had a low count of red blood cells and was requested to go to the Emergency dept of the hospital for infusion. It was successful, the hospital kept me in the hospital for 4 days for further diagnosis.
After the fourth day, I was informed that my liver needs replacement.
I just did not know what I should do next. Luckily the hospital Oncologist worked out and called a couple of hospitals for treatment etc.
The University of Virginia Hospital called although it was 100 miles one way from my place, the visit was well worth it.
After 8 months of continuous testing and various other checks, I was placed on the waiting list.
The funny part is one must be in the range of 28 in the meld score to qualify for a liver-not guaranteed.
By that time my face was totally jaundicing and fluid was gathering in my stomach which had to be syringed every 4 weeks or so.
At this stage, I was planning an overseas trip to Israel to get myself baptized again, and when I informed the doctor, he said to cancel all the plans without any explanation.
After a couple of months in December, I was informed that they found a matching liver for me.
My reaction was, well they just got hold of the wrong person.
Just could not believe that there was a liver waiting for me. God performs miracles in various ways for sinners like me.
The surgery took place in January 2019 and my donor was initially anonymous and then the hospital arranged to meet them after a few months.
This was a 23-year-old girl from Allentown PA, who was going to school in Lynchburg VA.
She was willing to take a chance and help someone for a second chance.
Amazingly it was a 93% match. How often this happens?
She and I are very close and we chat almost every other day.
I am still around with all the hospital regimens, like medications, food intake, workouts, etc.
Not sure what will happen tomorrow, since I am on borrowed time. But every day is a blessing
-
Like -
Helpful -
Hug
1 ReactionWOW!!! I'm so happy for you. My husband's MELD score ranges between 26-28. He cannot accept a donor liver. He needs the whole thing. He's only been on "the list" for 3 weeks, but it feels like years. They do say Florida has the shortest wait times, so we'll see. I don't think you're on borrowed time. I thing you've been given a second chance at a new life!!! Make the best of every day!!
Hi
Any reason he cannot accept a live donor liver?
They take 1/3 of the donor's liver and attach it to his body.
The liver grows to its normal size in 30 days for both parties.
Thanks for the kind words.
Regards